Through research and trying different supplements, I believe I uncovered a possible cause of my continuing vestibular symptoms, glutamate excess. I’m hopeful the solution I found to control the glutamate excess will result in improvement in my vestibular symptoms.
After my inner ear damage was uncovered through additional testing, I visited my ENT doctor. He basically said he didn’t know what to do, so he asked that I go back to my neurologist. He said he would pass on the new test results to her. After making sure my neurologist received the results, I made an appointment with her. We discussed the new results, and I was surprised that she seemed to be thinking the same thing that I was, that a past episode of vestibular neuritis caused permanent damage, and my brain was over-sensitive to it. She decided to have me try VRT (vestibular rehabilitation therapy) again, and if that didn’t work, she would consider medication options. I tried going to therapy and doing the exercises, but when changes to my daily routine resulted in worsening symptoms, like more daytime sleepiness at work, I decided to stop the exercises until I could get back to a baseline where I was making it through the day like before, with fewer symptoms. When I got the bills for the therapy sessions I attended, those plus what I had already paid for the initial assessment and the co-pays added up to around $1,500. All of this was just for six sessions! I canceled my future appointments and decided to stop the exercises. I figured I would talk to the neurologist about medication options at my next appointment with her. In the meantime, I decided to research supplements and found one called VertiGone on Amazon. I decided to stop taking the ginkgo biloba since it didn’t seem to be helping. The VertiGone seemed to help me feel better, but I never noticed any improvement in my vestibular symptoms. When I went back to the neurologist, she was talking about medications and options that made no sense to me. I just told her I would continue managing on my own and would look into making another appointment if my symptoms became debilitating. The neurologist seemed fine with that plan. At this point, I figured I wouldn’t be able to get any help from doctors, so I decided to go my own way.
I decided to continue researching supplements since the VertiGone didn’t seem to be helping. I found an inner ear supplement called Lipo-Flavonoid. It had various vitamins and minerals, which I was already taking in my multivitamin. The other components, the lemon bioflavonoids and choline/inositol, I had not been using. I thought I would try the lemon bioflavonoids first and add in a supplement for the choline and inositol if necessary. The lemon bioflavonoids made no difference that I noticed. I read that lecithin is a good source of choline and inositol, so I decided to give a lecithin supplement a try, especially since I could find it locally. I felt a big boost from just one softgel. However, I still noticed the sleepiness issues at work. After reading that lecithin could boost certain neurotransmitters, I began to wonder if taking a combination of neurotransmitter supplements would help. I decided to stop the VertiGone and the lemon bioflavonoids since they were not helping and began exploring neurotransmitter supplements. I was already taking 100 mg of 5-HTP. I ordered a 500 mg dose of l-tyrosine, and it seemed to help me feel better. I found a 750 mg GABA supplement locally. It ended up being too much, so I found a 250 mg supplement online. After about two weeks of taking that one, it seemed to be making me feel worse, so I decided to see if there were other options. After finding and reading this article, I decided to give taurine a try. That made the biggest difference of anything I had tried to that point. However, since my symptoms didn’t resolve completely with it, I decided to continue seeing if I needed to supplement for other neurotransmitters. I read that glycine could act as a neurotransmitter. No local store had a standalone glycine supplement, but they carried collagen powders, which have a lot of glycine. They were appealing because they were more readily available and had a mixture of amino acids. I decided to try collagen powder. I felt pretty fatigued after the first day, when I tried a full scoop. I thought about trying just half a scoop the next day, but I ended up feeling even worse! I noticed the symptoms that I would normally get after overdoing scrolling or other things that would trigger my vestibular symptoms, like dry eyes and headaches, coming on more and more throughout the day. I wondered if the glutamate content of the powder was what was causing me to feel worse. I decided to take the collagen powder back to the store and take an extra dose of taurine to see if it would calm things down. Since it seemed to do so, I took that as confirmation that I was dealing with an excess glutamate problem. When I ordered a standalone glycine supplement and found that it did not work, I decided to shift my focus from supplementing for neurotransmitters to supplementing to prevent (or handle) glutamate excess. Besides taurine, I read that NAC (n-acetyl l-cysteine) could also help with glutamate excess. Researching NAC was discouraging because of the controversy surrounding its use as a supplement, so I decided to go with a supplement of l-cysteine instead. What I read about its effects on glutamate was mixed, but I decided I had nothing to lose by trying it. At first, I took it with the taurine and my other neurotransmitter supplements. I felt pretty bad with all that, so I decided to drop all but the l-cysteine and taurine. I even stopped the 5-HTP, which I’d been using for nearly a year and a half. The taurine and l-cysteine didn’t seem to work either, although I did feel better after dropping the others. Since cysteine is used to make taurine in the body, I decided to try the l-cysteine by itself. I felt much better with just it, even better than I felt with the taurine if that was even possible. The next few days seemed okay until my body started to feel heavy, and it felt harder to breathe. I remembered reading that l-cysteine requires additional vitamin C, so I wondered if I needed to add vitamin C. Since I thought I got plenty of vitamin C through diet and my multivitamin, I didn’t feel that the extra supplement was necessary. However, when I tried some apple cider with added vitamin C, it wasn’t long before I felt a boost. On the way home from work that day, I stopped at the store and picked up a bottle of 500 mg vitamin C tablets. The vitamin C tablets definitely made a difference, but in the end, the 500 mg dose ended up being too much. I was able to find a bottle of 250 mg vitamin C tablets at another store, so I decided to get it and try it. So far that dosage has seemed to work a lot better. I informed my neurologist about the changes to my supplements, and she seemed fine with what I was doing.
I’ve had some bumps in the road getting started with the l-cysteine supplement, from taking it with other things that the l-cysteine rendered unnecessary to not taking it with the appropriate amount of vitamin C, but it seems to be helping. It seems to be effective at controlling glutamate levels. While I haven’t yet noticed vast improvements in my vestibular symptoms, my body does seem to be better at tolerating head movements and positions that seemed more triggering before. While scrolling on a display is still very triggering, I seem to recover better after the visual motion stops. I do, however, still tire easily after doing certain things, like tasks that require me to look anywhere but straight ahead. I wonder if the stress from dealing with the imbalance between my inner ears caused an increase in glutamate, which in turn increased the demand for cysteine. As a result, I developed a cysteine deficiency over time, and glutamate began to take over, perhaps causing decompensation due to my brain’s neurotransmitters being out of balance. Because of the decompensation, I began to back away from and avoid triggering movements and positions. Perhaps the reason I’m still having symptoms now is that my brain needs to relearn how to compensate. If so, I’m hopeful I can gradually work up to doing the things I was doing before the symptoms from visual motion and head movements/positions started. I’ve also considered doing VRT exercises at home and printed out a document outlining VRT exercises that looked simple enough to try. If there are still other causes of my continuing symptoms, I hope I can uncover those and figure out how to handle them as well.
Uncovering and handling the glutamate excess may be a huge step forward in dealing with my ongoing vestibular symptoms. Hopefully over time I can get back to doing things normally with few, if any, symptoms. If nothing else, it will help my body better handle the triggering of my damaged vestibular system. If there are still other issues to handle, I hope I can uncover those and figure out what to do for them as well.
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